The FTD Disorders Registry is an online database to collect information from those affected by all types of Frontotemporal Degeneration: behavioral variant FTD (bvFTD), any one of the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS). Persons diagnosed, caregivers (current/former), family, and friends can join and tell your story.
I encourage all those affected by PSP and CBD to join the registry.
Even if your family member has passed away, you can still join the registry and tell your story.
Note that the registry is open to people worldwide. The connections to research studies is only available for those in the US.